Yesterday was Charlie’s official due date. He celebrated by getting re-intubated and having major surgery. He now has a ventriculoperitoneal (VP) shunt that will redirect the cerebrospinal fluid that can’t absorb in his brain (because of the damage and scarring caused by his intraventricular hemorrhages) into his abdominal area where it will absorb back into his body. Wow, that’s a mouthful, and I didn’t even have to look up any spelling—NICU parents should be eligible for some kind of associate medical degree! The surgery went well and the two maven surgeons were pleased but Charlie’s recovery so far has been a little rocky. There had been some hopeful talk that maybe they could extubate him shortly after surgery and start food again today but he’s nowhere near ready for that. He had major desats and bradies yesterday all day long until he finally settled down when they gave him a steady Fentanyl drip. This morning they gave him a big dose of phenobarbitol to counter possible seizures and switched his Fentanyl drip to morphine. Oy.
After finally being free of all IVs it’s hard to see his limbs jabbed with needles and all those heavy medications coursing through his system. But I know it’s necessary and while I hate seeing him so completely drugged out I keep reminding myself that if I had brain surgery yesterday morning I would hardly be golfing today (not that I’d be golfing any day). Patience, as always, is what’s required and it’s what I’ll muster up. He can't have any food yet and we can barely touch him. It feels like we're going backwards but I know that's not the case—this surgery was a vital step that will bring us closer to him being able to come home. But it's still hard. That good ol' roller coaster careening down the tracks once again.
To make matters more uncomfortable, following surgery we moved into the very bay and the very slot where Charlie lived the first few weeks of his life starting on April 27th when two surgical teams furiously worked on both of my sons. As I sat by Charlie’s incubator this afternoon I realized I could draw footprints on the ground exactly where I was standing at the moment Oliver died in Kendall’s arms, the location is burned into my memory. I look across from Charlie’s current position and see where I sat helplessly as the doctors tried in vain earlier that day to get all of the lines into Oliver. And I remember taking my son after he died and bringing him over to Charlie's incubator so that the two could have a moment together before they took Oliver away forever. All pretty sad stuff and I really don’t like being there again. But I know we’ll move once Charlie “gets back on his feet.” It’s funny, I literally can’t remember what I ate for breakfast this morning (or if I ate any breakfast) but I can tell you the order of every bay we’ve been in during the past 108 days at Cedars: 4, 2, 1, 3, 4, 6, 2, 5, 4. I know these inane details are of little interest to anyone but I write them down because I’m afraid I will eventually forget and this blog is my only written record of this time.
Shift change is almost over and I want to get back and see if Charlie comes out of his drug-induced haze tonight. In the meantime, at least I’m getting in some good reading in the NICU during his recovery. I just read “A Day of Small Beginnings” by Lisa Pearl Rosenbaum which I absolutely loved and now I’m reading “Crossing California” by Adam Langer which is a novel set in my old neighborhood in Chicago during the late 1970s and early 80s. I know both stories resonate strongly with me because I keep thinking “God damn it, why didn’t I write these books?” We still talked to Charlie all day and are convinced he can hear us even while tripping on morphine.
I thank you from the bottom of my heart for any thoughts and prayers you send Charlie’s way as he continues to recover from surgery. I hope to be bouncing him on my lap again very soon.